This year, in May of 2012 my last grand-mal seizure put me in the hospital for observation with a VEEG until I had another seizure. This was not going to be exciting and it wasn’t. Most of my seizures were weeks to months apart and I was afraid that either I would leave with no seizure or have one and get a diagnosis I wasn’t prepared for. Turns out, I had another grand-mal seizure after they slowly reduced my ativan to nothing and from that, they diagnosed generalized Epilepsy and started medication treatment immediately. After a few days on the medication I was released with strict rules to follow regarding this medication. During my stay and after the seizure, however, I complained about the worst back pain I had ever experienced. Everyone shrugged it off telling me, “this is not why you are here. You are here for seizures, not chronic pain.” Um…this is not chronic pain, this is ACUTE pain. You know the kind that makes you want to scream every time you breathe, move, stand up (nearly impossible) or sit down. I waited a day just for a doctor to prescribe a heating pad. Really? So they made me think it was all in my head. If anything it was a muscle pain, like a charlie horse in my back from my intense grand-mal seizure.

After 5 weeks of my moaning and complaining and very unusal appearance to my husband, he took me to the ER because my less-than-helpful PCP would not schedule me for an emergency appointment (I know they exist). So I had no other choice; I went to the ER. They were skeptical too. “Are you pregnant?” they would ask. Uh, not a chance in … was I pregnant. “Are you willing to provide a urine sample?” If it gets you off my back about it, yes! After 2 and a half hours of lying there crying in pain the doctor comes in with my films and simply stated, “Well, I know why you are in pain.” Thank you, thank you, thank you, thank you – more vindication for me, not in my head. He proceeds to show me my x-ray of my spine and wouldn’t you know it, a completely crushed L1 vertebrae. We hypothesized this happened during my seizure in May and that the muscles contractions during it pulled that bone apart. Painful? Yes…there are no numbers on their scale of uselessness to explain this level to them. “Those injuries hurt really badly.” Hey thanks, I know, what are YOU going to do about it? Well, the position of the break is one where we can do nothing. I consulted a surgeon and he said he could do nothing to help other than offer a body brace (something like a body cast but could be removed when lying down). Out of the humanity in his heart he offered IV Dilaudid which helped a TON. Nothing at home would touch the pain because what I had at home I was already using to make my already present chronic pain tolerable. I attempted to go in for pain help a week later as it was preventing me from sleeping and they gave nothing but IV torodol and benedryl. I’m thankful for that much but would have rather had something for my pain. Instead I got a muscle relaxant and medication for my progressing UTI that popped up that day.

So, I’m struggling. Trying to take it one day at a time, one hour at a time and living for good days that seem to be getting further and further apart. I often wonder if anyone is listening to me and believing in what I am saying when I express pain through teary eyes. With all my medical issues, do I really look like some drug dealer off the street? I have an appointment with one of the most amazing pain specialists in the state on the first of August and hope he can provide me with something else as I know the limits of a PCP or any other specialist are heavy due to the messed up Washington State laws regarding narcotics, as if they have some right to determine who is really in pain and who is not. I’d like to break a few of their bones, give them the throw-up flu and infect their bladder and deny them pain medication and see how long they’d last. Certainly not as long. After tomorrow, I will be finding a new PCP and my wonderful friends on Facebook have pointed me in the direction of the University of Washington. My geneticist is there, so I figured I would give it a shot. I really can’t do any worse than I have with my current doctor.

Sorry if this post is a bit negative. I am very much dreading my appointment with my PCP tomorrow. I hope she has her crap together because so far, she hasn’t. No return on my phone calls or e-mails unless she has something negative to say or something that would make me work harder than is necessary to get something accomplished. Sometimes I feel like giving up but it is people like my GI (Dr. David Patterson) who keep me going forward. He actually called me and asked me to come in. Feeling as if I had done something wrong, like you feel when your father uses your middle name and calls you into his office (you KNOW it won’t be good), but he assured me it was merely a check-up and to review my medications. That is the first time I had an appointment scheduled not by me, but my doctor. It is apparent he is thinking about me and worried/wondering how I am doing. For that I am grateful. In this whirlwind of life I lead there are a few constants, my husband and family, and my GI doctor (who I have been with for at least three years).

Anyway, it is late and my appointment is early. Good night everyone and good luck.

~ Happy Tummy Days!

Taken from:

This list of 50 Ways to Help a Chronically Ill Friend comes from my old blog and was inspired by the article ’50 Ways to Encourage a Chronically Ill Friend’ on the US National Invisible Chronic Illness Awareness Week website.

Read the Spoon Theory and send them a link if you think they might not have read it. It can be an amazing encouragement to chronically ill people to know that someone else understand their life.

Don’t forget they are sick! Get well cards and gifts dry up pretty quickly when you have a chronic illness, but you don’t get better and unless a hospital stay is needed, it’s easy for everyone to forget that their friend is still ill. If you know that someone with a chronic illness is flaring or is depressed or just because, send them a card or a gift – it’s doesn’t have to be much! Just the thought will make their day.

It’s likely that they will be unwilling to ask for help, but will still need it. If you want to help out, try not to ask “What can I do?” which either invites the answer “oh nothing” or means thought is needed. Instead, think of something you would be prepared to do and ask “Is it okay if I do …. for you?”.

Be easy going guests if you go visit. Don’t expect entertainment, but also be prepared to do things if wanted. Knowing that a guest isn’t bothered whether we go out for the day (it can be nice to take advantage of having someone there to go places you wouldn’t go alone) or whether they read a book or do the housework is fantastic. It takes the stress away.

Preparing food for visitors can be stressful as many chronically ill people will not always eat properly on their own and you can’t suggest crackers for lunch to a guest! Take easily prepared food like fresh bread, dips and cheese/cold meats with you, or pop out to the shops for something. Asking if anything is needed for dinner or offering to pay for a takeaway are also wonderful.

If the chronically ill person has a baby, children or even a dog, ask if they would like a break sometimes. You may not even have to take the children/dog out – just having someone prepared to come round and look after them can mean a decent nap or a long bath can be taken.

If you live locally, easy meals in Tupperware containers dropped off at the house can be a lifesaver…especially if you don’t need the container straight away so it can be frozen. Just make sure you know what they can and cannot eat beforehand! Many chronic illnesses come with dietary restrictions, and these can change with time.

Be flexible and never make them feel guilty about things they cannot do. Chronic illnesses do not give schedules of flares or unexpected issues – we do not know in advance how we will be feeling.

Ask, “Do you have an errand I can run for you before coming over?” “No matter how little you have, you can always give some of it away.” ~Catherine Marshall. Just listen . . . until it hurts to not say anything. And then listen some more. Chronically ill people usually have a lot to get off their chests and often feel they can’t burden the people around them. Let them know they can talk to you and you’ll listen.
If the situation arises, ask “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that our experience can offer someone else hope and that we still have a purpose in life.

Treat them to a gift of movie rentals via postal mail through a service like Amazon rentals. It doesn’t have to cost much and even a few months rental can be a great gift.

Buy them things to cheer them up after you’ve gone. An inexpensive colourful top, a bright umbrella, a teddy bear or cartoon….
Ask them if they’d like to join you for a spontaneous event, whether it’s a local concert, a picnic or just a trip to town. Although it may seem like they cannot go anywhere without lots of planning, if you get them on a good day, then they’ll know then and there they can go!
Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.

Encourage them to make a (preferably online) wishlist and to add anything they find that could make their lives easier. Financial difficulties often go hand-in-hand with a chronic illness and just because we know of something that could help us, doesn’t mean we can afford it! Then encourage other friends and family to check the wish list for present ideas.

Educate yourself. Look up their illness online and if they are having new treatments, try to learn a little about them. It helps to not have to explain every little thing and may well make you understand alot better. Reputable sites like WebMD and Medicinenet are good places to start, but remember that 1, not everything you read will be true, unbiased and completely up-to-date and 2, by the time you have a firm diagnosis, many patients are experts in their own condition(s). Don’t use your knowledge to try and correct the patient – they may simply be more up-to-date with research than whatever you read. Educate yourself and only educate the patient if they ask.

Research support in their area and then send them no-pressure I-just-heard-about-this-and-thought-you-might-be-interested emails or notes about it. More support is always good, but a lot of the time, chronically ill people may not have the spoons needed to research it. National Associations or Patient Information Points at local hospitals may know of local support groups.

Don’t forget the carers. Many chronically ill people are looked after by spouses or parents, even children. Helping the carer means that they can look after the sick person better and the sick person will not feel so guilty that their loved one is their carer. Giving the carer respite breaks, calling them up and asking “how are you doing?” and letting them talk to you frankly or even finding them support (see if they have a local branch of the Princess Royal Trust for Carers , for example) as you might do for the chromically ill person will all help.

Be their advocate. If you are at an event and walking/seating is an issue because of their disability, ask if they’d like you to take care of it. If they say you can, be firm but not rude. Don’t embarrass them by making accusations of discrimination or by making a scene.

Don’t tell them about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).

Don’t pester them to try something you read or heard about and think might help. If you really think it might help, send them a newspaper cutting and leave it to them to decide whether to follow it up or not. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.

Never call them names related to their disability, like “hop-a-long” – at least not until they do it first and then be careful.

Never say “maybe you’re not that sick after all”, “it can’t hurt that much”, “you just have a low pain threshold” or minimise or trivialise the symptoms in any way. We get this enough from incompetent doctors when seeking a diagnosis. And far from making much of little aches and pains, most Spoonies are inclined to minimise their symptoms to the outside world – if we are showing pain, then it’s almost certainly a LOT of pain, not us making a fuss over nothing.

Temporary illnesses and injuries can help you to understand what a chronically ill person goes through, but it is never the same. We have symptoms that never ever go away and no one without a chronic illness can ever truly understand that. Be careful with simple throw-away phrases like “I know just what you mean” – you probably don’t! If you truly think you get tired or hurt like we do, then there must be something wrong with you!

If your friend has a disabled parking placard and you are driving, allow them to tell you where they want to park. If they’re feeling particularly good that day, they may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther – it’s a sign of independence and a striving for normality and should be encouraged as long as it’s not done to the point of overdoing things.

If you’re going out with a chronically ill friend and they mention they would like to or would normally use a mobility scooter, wheelchair, escalator, lift/elevator, etc don’t complain that it’ll take longer or draw stares. It may be the only way they can go out with you and not make themselves badly ill.

Accept that their chronic illness may be lifelong and may not go away. If they’re learning to accept it, don’t tell them the illness is winning and they’re giving in to it. They are simply being realistic!

See if there is any way you can enable them to do a loved hobby that their illness restricts. They may be an enthusiastic gardener who can’t dig or move a wheelbarrow or they may be a seamstress who can’t cut a straight line anymore. If by simple acts you can enable them to continue doing something they love, do it! It’ll be better than any gift.

Never assume they cannot do something without asking. It may be that it is something they can do on a good day and would like to, or that for them it is worth having to spend days resting before and afterwards.

Don’t not invite them to things because you don’t think they’ll be able to come. Having a chronic illness is isolating enough without feeling like you’ve been forgotten about completely.

Buy them a gift of a favourite magazine subscription. Having a chronic illness can be truly tedious at times, especially as you may not be able to get out to get things like magazines or may not be able to afford them.

If they don’t have a cordless phone, it would make a great gift! Comfortable phone headsets or phones with speaker capability make keeping in touch with friends even easier.

Ask what time of day is good for calls or visits. They may have a nap schedule they need to keep to or they may know that at certain times of day they’ll feel worse and won’t be up to polite conversation.

Be aware that what may seem like minor things to you can be big issues for a chronically ill friend. If you drive somewhere, ask if they’d like to be dropped off while you park. If you go for a picnic or to the beach, be aware that they may not be able to sit on the ground so bring a few folding chairs or cushions so they aren’t the only one perching above their friends. Walking from one shop to another may mean they need a rest before carrying on shopping. Trying to think about these things beforehand and to be accomodating will help alot…they are likely to not want to make a fuss and you helping in small ways can make a huge difference.

Give them a gift of an attractive plant like a rose bush that could be viewed from a window and say part of the gift is a planting service!

Never tease someone about how long they spend in the bathroom…don’t even mention it. If they’re taking a long time or going frequently, it’s because they need to!

If they have to stop work or receive disability benefits never say “well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it”. Most chronically ill people would dearly love to be able to work and be independent…and sitting on the sofa soon gets very frustrating if that’s really all you can do.

If your friend misses a special event in your life, don’t be grumpy about it. Call and ask if you can bring some photos over and tell them all about it. Let them know that they are still a special person to them and you want them to be part of your life even if they couldn’t be there on the day.

If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

Make sure they have an answering machine to screen calls when they feel ill…and don’t get offended or call back repeatedly if you get put through to the answering machine!

Check that your perfume/aftershave is okay with them. Many people with chronic illnesses end up with chemical sensitivities where some smells can make them physically ill. They may not want to offend you even if you are unconciously making them feel worse!

Never smoke around chronically ill people who don’t smoke. As well as chemical sensitivities, they may have breathing issues or the smoke might cause problems with a weak or suppressed immune system.

Never criticise someone for taking medications that may be addictive, even if they are ones with bad associations like methadone. Pain relief or illness treatment options can be very limited and it is far better for someone to have medication that makes their life bearable even if it is addictive, than to be in awful pain forever. Recognise that mental and physical addiction such as heroin addicts get is very different to someone needing a drug because without it they can’t get up.

Encourage them to research their illness and never tell them it’s making them worse. Self-advocacy in chronically ill patients has been proven to be beneficial to the patients and can be their best hope of getting a diagnosis, appropriate treatment and coming to terms with their illness.

If they need to cry, let them and just be there for them. Never say “don’t cry” or “this isn’t worth crying about”…it obviously is to them! And remember that while help is always welcome, do not make a chronically ill person into your personal project – at least not so they notice! Constant suggestions can be stressful in themselves! be subtle and be prepared to take a step back if needed.

Found this on the spoons page. If you don’t know what I am referring to – go here: The Spoon Theory

The following was tagged by their site and I thought it would be good for all of us, even the patients, to have a little refresher course. Please, feel free to add your own in the comments below =)

Happy Tummy weekend and try to stay away from those treats! (you know they aren’t good for you) <3

Things doctors say that aren’t helpful.

APRIL 5, 2012

We’ve all had this experience. A well-meaning (we hope) physician says something that sounds like it’s supposed to be helpful but isn’t. Sometimes the effect is to belittle our symptoms or tell us no matter how hard we’ve tried to communicate our experience, the message isn’t getting through.

*I’ll add in a comment or two here. You need to have open communication with your doctors. A doctor once told me you don’t even need to like the guy (meaning my pain specialist and as a side note, why are they all crackheads (jerks)), he simply needs to provide your medication as I don’t feel comfortable. I couldn’t disagree with this statement more. You must at least LIKE your physician or specialist to enable trust, belief and understanding that all make communication possible. If you can’t get it through your doctor’s head, no matter how many different ways you’ve tried, perhaps that doctor is not for you and you need to move on to someone who is. You’ll know when you find them and they will become an entagled part of your life of chronic illness, as you both work through it together.

To be blunt you are the customer (patient) and they are the workers (doctors) and if services they provide are not up to your reasonable standards, find someone else – it is your life, don’t let some crappy doctor belittle you into thinking you aren’t worth saving or if you are not actually sick when your heart tells you otherwise. My pediatrician, Doc Saba (yes I know I am 27 years old) I have known, still talk to and visit when I fly home (I’m talking to you Dr. Saba, if I hear you tell me out of shame, one more time of coming up to my area and not visiting, there will be words), since I was five years old (he always told me that I was going to be a doctor from the very beginning – singling me out from other other brothers and sisters…how he knew is beyond me – I would have become one but am restricted by my illness until I can grab a hold of it and keep it manageable). My gastroenterologist (Dr. David Patterson) I have known for three very wonderful, trying and terrifying years (regarding my recent hobby of collecting bacteria in my ports and body) all bundled up into one. To me they are super important. They know practically everything about me and I trust my lives with them. That is the kind of relationship you need or you will never move forward. If the doctor doesn’t respect you (trust, believe, appreciate), you need to move on; and as another side note, the doctor really has no business being in that profession anyway.

Sometimes, we as patients, can be rude, ugly, impatient and incredibly stubborn, and much of the time we have every right to be those things for far more reasons than I could possibly state here. But is it really worth it? However, it is not a one-way street and perhaps the burden is heavier on the doctors to move past that and get down to the real problem. Medicine is a study of a very complex network we call the human body; one controlled by people and these people are subject to the very things that make them human (they will make mistakes). It does go both ways for communication between patient and doctor to be successful. The patient needs to simply meet them half way.*

1. “You’re just stressed out!” This is usually said by someone who has no intention of doing anything to help with stress management. My impression is that the person saying this thinks that you can talk someone out of anxiety or worry that is likely based in painful reality.

2. “Don’t worry about it.” Closely related to number 1. Often said by a doctor who doesn’t want to answer questions. It is beyond me why doctors would want their patients to remain ignorant about their condition, but I’ve seen it.

3. “You need to lose weight.” If this is followed by reasonable advice on how to do so and an offer of support,” it is highly appropriate. More often this is said and no assistance is forthcoming. Hint to the socially inept doctors out there, saying this or something like “I can see you have a good appetite” during a pelvic exam is not only not helpful it is humiliating. (This actually happened to me when I was 18 years old.)

4. “It’s not your heart.” Often said when the doctor has no intention of helping you find out why you have chest pain. Even less helpful when said to someone who is having active chest pain that is helped but not completely relieved with nitroglycerin and has a history of heart disease. I feel great remorse that I delivered that statement many times in my early career working as a nurse on a cardiac floor. I’m sure some patients were reassured, but others may have felt despair that they were about to be sent home from the hospital (again) with no help for their symptoms.

5. “You may feel some discomfort.” If something is going to hurt, you should say so. This is the worst coming from surgeons who aren’t up front about the usual level of pain and discomfort felt either during or after an upcoming procedure.

6. “It’s going to hurt.” When said with a tone of disgust and no intention of relieving the pain. Even better when followed by, “What do you want me to do about it.”

7. “Cardiac cripple” This is not a medical term and has no descriptive value. A friend of mine says it’s a pejorative term used to describe a patient who has failed to get better despite the cardiologist’s best efforts. Having been described as such to the hospitalist by my old cardiologist (who also had a nurse inform me he didn’t care to help me with disability insurance paperwork because I have “no cardiac limitations”) I am inclined to agree.

8. “You’re going to have to do better.” Said with no instructions for how to do so or even what they are actually referring to. This hasn’t happened to me, but has happened to friends of mine.